基因科技發展下的生育與醫病互動

Reproduction and Patient-professional Interaction in the Time of Geneticization

黄怡瑾(Y. C. Huang) ； 胡淑貞(S. C. Fu) ； 王瑤華(Y. H. Wang) ； 林秀娟(Shio-Jean Lin)

《台灣醫學人文學刊》 6卷1&2期 (2005/09) Pp. 87-111

https://doi.org/10.30097/FJMH.200509.0009

摘要

台灣社會中婚姻與生育的關連性、優生與人權間的對立、與醫病知識的不對等，因基因科技加速發展，將帶來生育行為與醫病互動的諸多新挑戰。本研究以遺傳疾病病患家屬及執行產前遺傳檢測之相關醫護人員兩方為主要研究對象，去探討針對遺傳資訊、知情同意及結果告知過程，醫病兩方的態度、經驗、行為準則及彼此之間互動的方式。
因本研究為探索性研究，以訪談為主要研究方法。訪談對象包含“八位遺傳疾病病患家屬與十七名產前篩檢相關醫護人員。結果發現：（一）在遺傳資訊方面：醫護人員提出專業訓練、相關輔助衛教教材與面臨外籍新娘溝通能力等不足處；病患家屬則有遺傳教育之欠缺、等待貴人出現與透過組織自力救濟等因應過程。醫病之問有著責任歸屬的歧異與期待落差。（二）在知情同意方面：因基於自我保護，醫護人員著眼於同意書與拒絕同意書的使用。醫護的態度影響病患家屬，而為了保護自我與相對不信任感造成醫病關係的緊張，甚至於遺傳疾病的無法痊癒的事實，造成病患家屬對醫生是「保護病人還是醫師？服務醫學還是病人？」的疑惑。（三）結果告知方面：醫療院所抱持著「沒有消息就是好消息」，結果異常時才通知；病患家屬面對結果時有著說與不說與基因權限的困惑。
實務上的建議包含遺傳諮詢課程的提供、遺傳諮詢員的設立與其證照制度的建立、統一衛教資料的更新強化與推廣應用、及利用大眾媒體對民眾作產前遺傳檢測的正面宣導。學術研究上則建議：加強因應外籍酊偶家庭需求的研究、遺傳疾病補助方式效益的研究及人權與宗族主義交錯分際的探討。

關鍵字

基因檢測 ； 遺傳疾病 ； 醫病互動

並列摘要

If genetic services are more and more accessible, what moral dilemmas will be confronted regarding decisions of pregnancy? How will it affect the interactions among physicians and patients? In Taiwan, prenatal genetic testing has been conducted for years. As one of the earliest applications of genetic technologies, utilization of prenatal genetic testing is contributed to the observation and analysis of impacts. This study was to explore and compare the perspectives of persons with a family history of genetic disease as well as those of health professionals working for prenatal genetic testing with regard to genetic information, informed consent and results disclosure.
Data were collected by the in-depth interviews. Informants were asked to express their experience and subjective feelings regarding genetic testing.
Findings: (1) Genetic information: Shortage of regular in-service education programs and materials of genetic testing, and difficulties of communication with foreign brides were reported by the health professionals. On the other hand, families with a genetic disease suggest that genetic information should be included in our education systems. (2) Informed consent: Based on the concerns of negligence, agencies of prenatal genetic testing implement the consent form and the dissent form to protect them. Due to the lack of effective communication, there is no mutual trust among patients and physicians. Patients' families give a doubt about whom do physicians protect or serve? (3) Results disclosure: According to the rule of ”no news is good news”, agencies of prenatal genetic testing would not disclose results of genetic testing routinely unless abnormal findings were indicated. Be a mother or family, ”to say or not to say” becomes a tough decision. Furthermore, being a family of patients having genetic disease, they were usually confused about the lines of privacy in terms of genetic information. Suggestions are included in the end.

並列關鍵字

genetic testing ； genetic disease ； physician-patients' interaction